‘Am I mainstream now Mum?’

We passed the 100 day mark this week. 100 days. 100 days of incarceration (though not according to some involved in this story who insist the locked door isn’t stopping LB leaving the unit). Let’s park that detail for now. And the emotions associated with this experience.

Leaving sounds are being made. Most vocally by LB. The slow wheels of social care are groaning into a ‘lets talk about potential provision at some vague meeting at some unspecified point in the near-ish future’ position’. I suspect (sadly) this may be quite something in social care activity terms in the case of young dudes like LB.

Incarceration came about because there was no care or support available. This (incarceration) has given us – er, I’m making some unsubstantiated assumptions here that Goffman would possibly be proud of – a slightly better position in terms of access to support. I’m less than optimistic about what that support might look like, given anecdotal and other information, but the bar is set so low from where we are, support of any shape that actually supports, is progress.

Reading between the lines (because nothing is transparent here) unnamed people (in health/social care/education?) are aware that LB is ready and in need of support to enable him to be released from the (I’m assuming) costly provision he’s been an inmate of for the last 100 or so days. Not that he’s locked up or anything.

Now there’s the rub. For the first time, we’re insisting on effective and appropriate support. This position makes me feel slightly heady, slightly hysterical, hugely enraged but mainly sad.

But hey. What about LB? How’s he doing?

Three things jump out this week.

1. He attended the ‘feelings’ group which was progress after the first meeting when he turned up, gave everyone the finger and left.

2. He’s asked me repeatedly this week if he’s mainstream now.

3. When I ring and they pass the phone to him, he has a nifty exchange with me – ‘Yeah, right’ ‘Yeah, cool, see you then.’ ‘Right, yes, cool, yeah’.

I’d take these three things as a sign that there is some shaking down in his mind of who he is, and what he wants.

C’mon social care (if you hold the power here). Let’s act on that and create him a space in which to live productively. And, while I’m at it, can I chuck back into the mix the feelings of siblings who are offered no support, and, if under 16, not allowed to visit their brother or sister on site?

It shouldn’t be like this.

Squashing, starving and filling the dishwasher

LB wants to come home. And we haven’t got support yet to have him home. The care manager is looking into options. The unit have pretty much reached the end of the road in terms of helping him. They’re upping his activity level, encouraging him to empty the dishwasher and creating some social stories.

An email from the care manager last week states;  “There is a meeting currently being arranged I understand it’s the 8 July but no time has been set yet to discuss in more detail this option [support].”

Eh?  Seriously? July 8th? No time set?

Just in case anyone has forgotten, this is an 18 year old young dude. How long is it going to take to put some sort of appropriate support in place? To enable him to come home? What value is being attached to his life? [Well I’d guess crap all to the last question].

At the weekend, LB succumbed to bear hugs from both Rosie and Owen and, just as uncharacteristically, said ‘I miss you so much’.

Heartbreaking.

Today when I visited, his room had been painted. All the posters, photos, drawings and detritus built up over the last few months, were removed and piled up on a cupboard. He was kneeling on the floor. Flicking through a truck magazine on his bed. Surrounded by white walls and nothingness. Even his unwanted, unsought after ‘space from home’, was open to destruction. Timetabled to fit with some tendered/purchase ordered, person discounted process. He wasn’t happy.

It’s as if any semblance of family life, of anything and everything we’ve tried to create and achieve (including filling the dishwasher) is at the mercy of some peculiar and arbitrary non-space between health and social care, between learning disability and mental health. A space created through the provision of no effective support/care and mediated through a bizarre emphasis on  ‘choice’, thoughtlessness and the vagaries of what’s called “service provision” despite not really offering a ‘service’.

In one of those funny twists of fate? coincidence? general shite? I got an email reminder today about a new university wide autism interest group. The first meeting is on Thursday afternoon. On the distribution list was Dr X (who I’ve now re-named Doc Dire). The one who suggested we did the hunter gatherer diet and holding therapy all those years ago. There is no evidence to support the former (still) and there are, according to Autism Research, “numerous personal accounts of the damage caused to people with autism and other conditions” in relation to holding therapy. So, the advice from the experts* from yesteryear was to starve LB and squash him. And now he’s waiting in limbo, for some faceless people to “set a time” to discuss future support “in detail”.

Marks out of 10 for health and social care provision over the years?

Let’s not go there.

*The other advice from Doc Dire was to avoid support groups because they were just filled with a bunch of moaning women. Hilarious.

Choice, cake and a chat group

ryan5-306A couple of weeks ago, a support group for unit patients was set up. LB received an invitation to attend this group which was to be held on the Friday afternoon in the living room. That evening when I visited, I asked the staff member how the group had gone. Bit of a disaster, it turned out; everyone chose not to attend.

The choice agenda in practice. Kind of hilarious.

The following week, the group ran again, this time with the addition of cake. LB turned up, ate cake and chatted. A lot apparently. Of both.

The group is now called the Cake and Chat group. Well, for LB anyway. I’m not a big jargon person (I hope), but I think this is probably a rocking example of person-centred thinking.

 

 

The logic of care

As luck would have it, I’ve been reading Annemarie Mol’s ‘The Logic of Care’. Just in time for the response to my NHS complaint about the events leading up to LB’s admittance to the unit to plink through the letter box.

These events are recounted on this blog in some detail but can be summarised as, er, a complete lack of care. Mol argues that the current emphasis in health (and social care) on choice is inadequate. This, too, is timely. Choice schmoice if you ask me. She’s concerned that an emphasis on choice leads to things becoming fixed and constrained; the circumstances in which we make our choices, the alternatives we choose from and so on. And choice is tied to individual responsibility. Instead we should pay attention to the actions of care. We should be doing things. Collective practices and attempts to make life more liveable.

Well I’m liking Mol’s interpretation largely. So, what about the response to our complaint? It has been investigated. Key people have been interviewed. The initial findings were further challenged and we have a detailed and considered letter. I don’t want to go into the details of this here as there are some outstanding issues, but I do want to draw attention to a phrase that is explicit and implicit throughout the letter; ‘the clinical care and support was satisfactory and of the standard of care that would be expected from the service’.

Now in Mol’s research, when people complained about their healthcare, they were not stories relating to a lack of choice, but experiences of neglect, of feeling abandoned. That nobody cared. Our experience of the period leading up to LB’s admittance to the unit was that health and social care didn’t care. The two professionals I howled down the phone to that Friday afternoon, after LB had punched his teacher in the face, didn’t care. But they weren’t the only non-carers. There was a structural and systemic lack of care across the health and social care board.

But we apparently experienced the ‘standard of care expected from the service’. Whose expected standard of care is the glaring question here? Based on what criteria? What we experienced was nothing that could be remotely daubed as “care”. And, as always, I’m left with my litmus test of wanting to ask the people involved during that period; ‘Can you just, for a moment, imagine if this was your child? Experiencing this level of “care”? What do you think you would feel?’

So, we’re left with a misplaced (or mis-used) choice agenda and a system in which the expected standard of care equals no care. Luckily for us, there was a supporting cast of dazzling carers; family, friends, Charlie’s Angels, head teacher, school nurse, cake-makers, neighbours, twitter buds, colleagues, and random strangers. That’s what care looks like. Collective attempts to make lives more liveable.

Losing count – around Day 90

At the moment I feel a bit beaten with knowledge of awful practice/terrible processes in the broader ‘learning disability’ world and the implications of these for people (in social, economic and health terms). Aside from research evidence, I know a lot of young (and older people) whose lives are, at best, less than adequately supported or enabled. A Facebook transition parents forum (I largely lurk on, sorry) consistently details examples of poor support, battles and misery. For example, from three days ago;

Nothing gets easier. R is suposed to be leaving school officially end of June but we have no agreed care in place (not my fault). One of the day care places (2 days a week) is having major alterations and have said they cant take him until 15 august and the other day care choice (2 days a week) doesn’t start until 31 July, so I am going to be left looking after R once he has left school on 18 July. Whilst trying to work and also caring for my mum. Jolly hockey sticks!!! They all know R is leaving school,have known for years so why people cant get their bloomin acts together and sort it for him I don’t know. Plus I have to find some part time employees to help with the other day a week and transport to and from respite etc and the bloomin paperwork. I am positively frazzled. And if I hear the words you are no longer responsible for him any more I am going to spit!!!!!

I know I keep saying this, but support is shite or non-existent. Aspiration is a dirty word. Jargon laden processes work to effectively crush young people and parents’ hopes and expectations over time until the most basic/cheap and soul destroying ‘life outcome’ – unproblematic weekly burgers and extensive television viewing [by unproblematic I mean without upheaval or disruption in care provision/budgets] – become the default (or even sought after) position. The independently supported no-life. I’m calling it a life outcome rather than lifestyle because the latter implies some choice. And really, this isn’t about choice. An outcome of the burger/tv existence is, of course (these things ain’t rocket science), the health inequalities detailed in Emerson’s depressing read (and countless other reports).

We took LB for an Indian buffet again today. He was cheerful, very chatty (well largely to himself and, unfortunately, with the waiter*) and ate numerous plates of nosh. He bounced down the Cowley Road after to Honest Stationery and Tesco for some shopping. His good mood disappeared the split second he realised it was time to go back at the unit. (Though he managed not to punch himself in the face today).

He wants to come home. We want him to come home. But now we’ve had a break from the pre-unit experience of cobbling together after school cover – through daily shuffling of commitments and working late into the evening (and trying to ineffectually defuse anxiety) – we want effective support in place first. Not a big ask? Nope, you’d think not.

But what has also emerged loud and clear through the knowledge we’ve gleaned from various sources (most importantly experiential sources) is that not only is there a paucity of support options forget aspirations, silly, but once any form of ‘support’ is in place, possible alternatives disappear. One friend spent six years trying to move her daughter from an inappropriate supported living space, nearer to home.

I’m beginning to feel more human today after several disturbed nights this week. The Care Plan Approach meeting left me with a fear that LB would be dispatched to any available ‘room’ in any craphole provision by the social care/health machine. That he would “choose” to move to [fill in the location here] to live with his peers, eat burgers and watch tv. For the rest of his shortened through an unhealthily lived life. This fear, in some ways, works to make a ‘local’ version of this no-life infinitely more appealing.

I’m beginning to think that our experiences of learning to live with a vibrantly different child (in good and sometimes not so good ways), that originally sparked the writing of this blog, have been transformed by the sledgehammer experience of “transition”. The equivalent of some kind of crap horror/slasher low budget film that you can’t wait to switch off. If you have the choice.

*Unfortunately given his new 1970’s type sit’com’ type Indian accent in asking for his coke.

An independently supported no life

Full weight of mental health/learning disability bureaucracy/uncertainty yesterday, with LB’s CPA (Care Plan Approach) meeting. Anxiety was compounded by the rumour (don’t ask) that a CPA meeting was linked to discharge. Eh? Discharge? After the effective deskilling implications of the “choice” agenda for both him and us over the past months?

Adding to the general mix of uncertainty, on Sunday we went to London (one of LB’s fave and regular, pre-unit, activities), organised optimistically with thoughts of his possible impeding discharge in mind. After a good day hanging out, he punched himself so badly in the face on the motorway home that his nose didn’t stop bleeding for nearly 20 minutes.

Discharge seemed to be the implicit focus of the meeting based on the fact there is little more to be gained from his stay there. If there are no answers emerging through this process, who do we turn to? Er. Mmm. Good question. I suspect the answer to this, for the health and social care world, is twofold; 1. More drugs. 2. Some ‘independent supported living’ gig in which LB watches tv and YouTube all day while underpaid and untrained staff scratch their arses. A type of drugged up independently supported no life.

Anyway. Back to the CPA. Jan Sunman from Oxfordshire Family Support Network, with the support of Fran Steep, introduced a person centred dimension to the meeting. With varying levels of engagement and resistance. This disrupted proceedings healthily, making visible rigidity and entrenched expectations. It also enabled us to move beyond a 20th century medical model of learning disability and look at LB as an individual and not a set of behaviours. LB pitched up and made a contribution, muttering under his breath ‘this is bollocks’. Love him.

Anyway. There was no discharge date. Well not one we know of. Instead his activity level is to be increased, including some chores, to bring him back to a level where he’s able to do more than watch the tv all day. In the meantime, we will grub around trying to find some meaningful support. It shouldn’t be this hard.

The walk and the talk

Yesterday I got home about 7pm. I rang the unit to ask if LB wanted me to visit that evening or today. I don’t feel I have to see him every day, but I like him to know that we’re around.

The staff passed LB the phone and I asked him the question.

Today“, he said, straightaway.
Are you sure?” I asked,one eye on a bottle of wine chilling in the fridge.
Today, Mum, today“, was the firm answer.

When I turned up at the unit, the staff were surprised to see me. He’d given the phone back to them and said I wasn’t coming. Funny. Or is it?

The unit team have produced a communication care plan for LB which is stuck on his bedroom wall. The first objective is;

  • The family need to phone if they want to come. If LB doesn’t want them to come, staff to suggest to try again on a different day.

Mmmm.

The Department of Health only days ago published a joint statement with various partners about post-Winterbourne care for learning disabled people, which included a recognition of the learning disabled people in other NHS-funded hospital care. A commitment was made in the Winterbourne View concordat “to ensure that by 1 June they will all have had their care reviewed and a personal care plan developed, built around their particular needs, taking into account the views of their family carers”. [italics added]

Now, these things (as usual) ain’t rocket science, but I would have thought LB’s communication care plan could have started with any one of a billion objectives that would support and facilitate his communication with others. Starting with this one is kind of problematic to me, as it sets us up as a problem, or an obstruction to LB’s development. An issue that emerged in the very early unit days.  Given that only a few months ago, LB was a typical teenager, living with his family, I’m not sure what sense he makes of it, which may be why he told the staff I wasn’t coming, having told me I should. The communication plan is on fire, clearly.

But then, as with most of these things, there is a helluva lot of talking the talk, but little walking the walk. It doesn’t matter what grand statements are made at the top, if they ain’t going to translate into practice. And the irony is, I/we/carers are forced to become ‘problematic’ to try to get some walking done.

Choice anyone?

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Knowledge sources

I had a call yesterday from the person running a specialist arm of a charity providing educational support to young learning disabled people/children. A care provider basically. I was put in touch with her through a mate, who met her in connection with her daughter’s transition to adulthood.  My mate rang me to say that this woman was one to speak to about LB. The subtext in this exchange is that there are a lot of people it ain’t worth speaking to. Something I think most parents of disabled children learn sooner or later.

At the time of the call, I was at a local retreat where we go for concentrated writing days a couple of times a year. The woman’s matter of fact summation of our situation contrasted with the scenery and sunshine. She reflected on how odd it was that various things hadn’t happened all those weeks ago; before we were ‘driven to such an extreme measure as admitting LB to the unit’.

Whoah.

That is an extreme measure. I almost forget the brutality of it. And here we are 80 days later, nearly a quarter of LB’s 18th year spent in hospital. Kind of beyond extreme really. This so should not have happened.

Specialist woman zoomed into action over the phone and made a plan to plan a possible programme to support LB’s return to school. Depending on funding of course. Cough cough. She was definitely one to speak to. But then she would be if she was recommended by a mate. Someone with personal experience of the gig. That’s the way it works.

If we’re going to talk about hierarchies of knowledge, my money is on the mate/mother network every time. Efficient, effective and it don’t cost a penny.

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“Finding him something to do…”

It was LB’s community team meeting at lunchtime today. He’d refused the farm so talk turned to finding him something to do instead of school. My brain nearly melted.

How can we be in this position of “finding him something to do“? Not just him. Any young learning disabled person? How can we be talking in these terms? Where’s the aspiration? The opportunities?  Ironically of course, giving LB choice is an effective way of erasing aspiration from his life; he will choose to stay in bed, watch DVDs and eat loads of cake.

I walked back from the meeting, head reeling. I’d mentioned that we have given thought to LB’s longer term plans (of course), we have got a folder full of residential college brochures that the county council will never fund, we know that local college provision is crap, and that leaves, er, direct payments. Which is where we started.

How can provision be this crap?

Well the walk to the unit kind of (but not really) sheds some light on that question. A 25 minute walk through a local estate to the ring road where the site is. I thought, funnily enough along the way, how this location reflects the status of learning disabled people in society. How much learning disability provision is located on the margins, at the edges of towns and cities? Winterbourne View was on an industrial estate. Leominster day centre is literally next to the dump.

A very recent indication of this status is evident in the endless discussion and jokes in the media, and social media, about the ‘swivel eyed loon’ comment, with barely any reflection on the offensiveness of this comment. It’s almost as if people don’t see it…. because really, and maybe subconsciously, they don’t see learning disabled people as fully human. 

I got home and had an email from the Care Manager. I’d chased her up this morning about arranging a meeting to talk about LB’s future plans. She’d emailed me a couple of months ago to say that when someone is about to leave the unit, they have a Care Plan Approach (CPA) meeting to discuss what is going to happen.

Her email said it was being held on June 10th. In less than three weeks time.

Turned out the invitation had been emailed to various professionals last week with a note at the bottom saying:

Please let me know if anyone else should be invited to this meeting.

No words. Just tears of frustration and rage and despair.

Liminality, mothering and something?

Crap. Crap. Crappity-crap. Thoughts are pinging round my head that I want to write and ‘resilience’ keeps cropping up to capture them. Ggggrrrr.  I’m not convinced by ‘resilience’ in this context. I want a different word, one that feels more comfortable. But what???

Anyway, parking that for a moment, I had two days off this week. What a pile o’ shite they’ve been in some ways. Terrible weather, the weekly community team meeting (CTM) at LB’s unit which is (inevitably) a real party stopper, a few failed tasks and overdue domestic stuff. The cockroach remains in the freezer, way too cold and miserable to schlep up to the post office – me/the weather that is, not roachy. LB refused my offer of various outings preferring to have a long bath instead. [And no, I didn’t play the McDonald’s card again, because it can’t become about burgers all the time].

After piecemeal chores, and heating up leftover curry for me and Rosie, I went back to bed with my book and ipad to power through some Candy Crush levels. And have a kip. That was cool. We got to visit LB early evening and, with some persistence, caught his attention in a scrap metal yard discussion. With him smiling, it was ok to leave. (And get caught in rush hour traffic on the ring road home. In the pissing rain).

Anyway, this is a long ramble really, about my thoughts yesterday evening.  I got to thinking about the recent jaunt to Bristol with twitter buds Kate and Alexa, to visit a superb social enterprise set-up. This memory was one of those winding moments that can be unexpected.  It’s a funny one really. I avoid LB’s bedroom and feel sad when the odd bit of his clothing comes through our (chaotic) washing process. But I can watch previously lost home movies with real enjoyment. Then I notice an old ‘Pupil of the Week’ page (yep, the dude racked up quite a few over the years) pinned to the fridge, or chat to someone in the street, and that punch in the stomach is back. Together with the old rock throat combo.

Ironically, 57 days on, we’re in another liminal space.  Liminality was something Katherine RC and I wrote about a few years ago in relation to being (academic) mothers of disabled children, excluded from disability studies (for not being ‘disabled’). LB being contained is another version of this, in a different space.  We have no idea what is going to happen, how it’s going to happen and what we should do to help/make things better for LB (and us). There are no guidelines, no advice, no rulebooks.

The CTM focus is on the here and now; LB’s everyday life in the unit. The broader questions can’t be answered. I was recently flagged up as a problem in a meeting I missed; described as unable to move beyond seeing LB as a child. While this has since been ironed out as misunderstanding/miscommunication, it contributes to the experience of liminality.

My reflections here are twofold; I’ve been struck by our resilience adaptability? acceptance? ability to get on with stuff? as a family. We’re all mucking in and making do, getting through and looking out for LB. That’s fab. Seriously fab. I don’t know where these resources come from – if someone said 56 days ago, that LB would still be in the unit at this point, I think I’d have collapsed – but we’re muddling along.

My worry is that in the same way I’m only able, with hindsight, to view the course we took with LB as a pup, as unhelpful, we may similarly get blown off course here. We’re almost back in that ‘just diagnosed’ type space. Unable to make any sense of it and dependent on the views of health and social care professionals.  We have no idea what ‘the course’ is, or should be, particularly now LB’s tipped into an unthinkable place. And perhaps they don’t either.

I also wonder if being ‘resilient’ may muddy things.  We’re so busy muddling along, dealing with direct payment nonsense, negotiating visitations to LB on a daily basis, schmoozing, ranting, questioning, trying to get some sleep, and hold down jobs, we’re unable to see things clearly. We’re simply following a well trodden path which I suspect should be changed.